Take a moment to describe how you or your loved one currently manage this condition, including any medical treatments. How did you or your loved one and doctor decide on this approach?
I do nebulized medicines in the morning and at night. I don’t know if you guys really want specifics on what medication I’m on. Pulmodyne, Albuterol, Colistin, Tobramycin. And then I do a saline solution nebulize. I do nasal irrigation and then I take a lot of vitamins and enzymes for digestion. So yeah, a lot of those meds, I have to pick up at different pharmacies. That is quite a bit of time making sure that my prescriptions are up to date. I’m luckily on Medicaid. So, that streamlines all of my insurance issues. Other than my daily treatments, I do a lot of cardio workouts to keep my lungs clear. That’s pretty much the bulk of it. If I get sick and I’m on IVs in the hospital, that’s a whole different ball game. It’s a lot more, obviously. It can be up to two weeks. I’ve been in the hospital actually for a month a couple of times. Luckily I haven’t done that in at least six months, so that’s good.
Since starting Trikafta, I’ve stopped doing the vest. But I still do my breathing treatments. I don’t do hypertonic feeling anymore, and I talk to my doctor. Just that life gets so overwhelming, and that was just one thing too many. So I’ve stopped those. I take a lot of medication for my cystic fibrosis. Since Trikafta, things have gotten better and I am doing exercise to help clear my lungs out.
I manage my condition primarily based on the advice that I get from my pulmonologist at my CF clinic, I go to Boston Children’s Hospital and they have a wonderful CF clinic for adults. CF patients with adult pulmonologists, a whole team including nurse practitioners, nurses, etc., who work with adult CF patients on outpatient and inpatient business. So I basically rely on them, obviously, primary for my information and my care, but I also take into consideration my friends within the CF community that I had before we couldn’t hang out together. And friends I’ve made after, by joining blogs and Facebook groups, where people who are in my situation, which is adults with CF, sharing information about day to day life, about treatments that they have had, different medications they’ve had. So those are the most influential things on deciding my approach for treatment. And then if I read about a new treatment, I can ask them about it. And then I can ask my doctor about it and get my doctor’s opinion, and of course, going to my doctors sometimes they have the information first and they’re the ones who do all these tests that determine how I’m doing and what I should do and what I should not do. How I manage my condition? Various medical treatments. I mean, from the moment I wake up in the morning to the moment I go to bed at night. I wake up and I have to take pills. I have to take nebulizers. I have to take inhalers and I have to do physical therapy. I take puffers, inhalers, I think they’re called bronchodilators to help open my airways. Have take nebulizers, which are inhaled medications that come out as the mist to also help open my airways. And then I take oral medication, tablets, vitamins, antibiotics, multivitamins, things of that nature. Then I have to repeat that entire process at night. It’s very time consuming because there are multiple nebs, multiple puffers, multiple medications, and they must be taken certain time apart. Some you have to take with food, some you don’t have to take with food. And also usually I would do the Vest, which is sort of this machine that vibrates around you in lieu of having someone to actually administer chest physical therapy. But I really hate doing it just because it’s so time consuming on top of everything, sometimes I would try to multitask and be online, checking my email, while doing a neb and hooked up to the Vest. But then you get lazy, especially if you’re going out. But with COVID around I kind of have more time. But also, on the other hand, I kick it out and walk and do normal exercise because of COVID. So inside, I have to make sure that I really am doing the Vest in lieu of chest PT and taking all my medications. And then in addition to that, you just have to be careful when you’re eating that I’m taking enough pancreatic enzymes so that I’m not getting a stomach ache. And that I’m not taking too many that I’m getting constipated. And watching what I eat to make sure I take enough enzymes depending on how much fat, grease, etc, is in the meal. So it’s something constant.
So I am currently managing this condition by taking lots of pills, enzymes, omeprazole, vitamins, Trikafta. And I’m doing two nebulizers, hypertonic saline and Pulmozyme, and a vest each day. And our doctor decided on this approach because it was just what he’d thought to work the most. And I also run to manage this condition. And he said that that also helps as well. And we just decided that’s the best approach to keep me healthy and keep my body safe.
Like I said before in my previous statement, we use a med board to help, dry erase magnetic med board. I make that very specific, that way you understand that you can remove and replace medications as needed, which we’ve had to do often. A lot of her meds have been changed or just taken away completely, and we’ve had to replace them. And so that’s been beneficial, being able to reuse the medical chart. As far as the doctors go with the treatment, basically treatment has been decided for my daughter, for her lungs, mainly because her lung functions keep decreasing. And so they’ve had to change some things up and increase some things, in order to help her maintain. And the doctor just basically, he sees her a little bit more consistently than what he normally would at this point, because of her lung functions being lower and her being hospitalized more this year. But yeah, I think that’s about it.
Well, with the current conditions and current medications that I’m taking everything is stable. It’s not going downhill. I’ve since been on a new medication and haven’t gotten too much feedback on it yet, but everything seems to be stable so nothing has changed. Nothing needs to be changed. That’s how we’ve all come to agreement on the treatment that I’m taking. That’s just how I managed my medical treatment and how we’ve decided on this since it’s not getting any worse, that’s the best way to treat it.
I take many nebulizers, antibiotics, and then I also have some module dilators in case I need them. I take many of the vitamins and other nutritional supplements like magnesium and iron, and different things such as that nature. I also take a lot of other pills like the steroids and the sinus medications as well as I just started the modulator to see how this goes for me. I also take IV antibiotics for my numerous infections, so it’s a broad scale of a lot of therapies that we use, along with chest therapy, whether that be acapella or chest PT, and I’ll also use exercise. Exercise is great for my treatment for not only keeping the body strong, but to help with those secretions.
We have added and deleted treatments over the years. We do what feels right and add in when we need more treatment, when we need a stronger something.
So currently, the only medication I’m on is Trikafta. That has allowed me to forgo any other treatments for CF, other than enzymes, and I was encouraged to try this medication by my doctor, and I’m very thankful I did.
I manage my condition by taking medications every 12 hours. Also making sure I get plenty of rest and exercise. Me and my doctor came up with this because exercise helps my lungs, and obviously, I need my medication.
So my daughter takes about 20 different pills. So, every day she wakes up and takes a handful of pills. She does a breathing treatment, which includes two or three inhaled medicines, plus 20 to 30 minutes of airway clearance on a vest machine. She also has to have an insulin shot every morning. And then throughout the day, she has to take medicine, every time she eats food. She has to monitor her blood sugar throughout the day, and potentially get corrective insulin shots. Or she may have to eat more, if her blood sugar is dropping low then she’ll have to have extra carbs. And then she has another set of medicine she takes in the evening, and another set of breathing treatments, inhaled medicines, airway clearance, etc. And those are days when she’s healthy. So if she’s sick, she has additional treatments, additional medicines, additional doctor’s appointments. She does have to see specialists every three months, regardless, at the very minimum. Plus, she will see an additional ear, nose, and throat doctor, an endocrinologist, in addition to her pulmonologist, her respiratory therapist, her gastroenterologist, her pharmacist, social worker, dietician, she sees a lot of different doctors.
We manage our condition of cystic fibrosis by therapies, airway clearance devices, and also nebulized treatments. We do those twice a day. We do our albuterol, our HyperSal, and our Pulmozyme each day. And then and we do airway clearance twice a day with a portable vest called the Monarch. We also add exercise regimen that. My son runs about four miles every other day. That’s one of the ways that we manage the condition.
Managing my CF, including medical treatments. Well, one thing for me, I have taken medicine since forever. I was diagnosed at a year old. And so taking pills is just so ingrained into me that if something happens in, it’s rare that I would forget to take them before I eat, but there’s a nagging thought. But the majority of what I take is in the morning. So that works out well because I always eat a good breakfast. At night time with my last Trikafta, I’m doing much better with that. I’ve been taking it less than a year. So at first it was a little bit of a struggle, but now I’ve gotten to where that just, I just know that’s what I need to do. As for as medical treatments it’s just a habit. And I’ve learned that if you get out of the habit, it’s really hard to get back in. But if I form a habit, then I just kind of self taught myself, it’s like, “Oh yeah.” As long as I make it a part of my day, sort of like brushing my teeth or eating and taking my pills in the morning. Then it’s much easier for me. And the doctors and I do, I’m very much a part of my medical care and it’s very much one voice. So we talk and they, as long as I do it, they let me decide the best way because they’re not there in my life. And so, they’re okay with, as long as I do it the right way, is making sure I do it.
My doctor and I decided on many different approaches just because of the guidelines for how to treat my disease. I take medications to help with pancreatic insufficiency, chronic pseudomonas infection, airway clearance, and also things just to help with general malabsorption. I also do medical devices on top of this just to aid my lungs to make sure that I’m clearing them from any sputum that maybe-
This approach has just developed over time because I’ve had this condition my whole life, so it’s fairly standard. But I do breathing treatments with three different medications in the morning and the evening. I also take medications by mouth in the morning and the evening. Exercise is important daily. If I am sick, I am usually admitted to the hospital for two weeks and antibiotics.